adventures in family, faith, and Down syndrome

The Church Fiasco

by Maggie on January 4, 2016

I will admit that I work too hard to keep it all together when I’m in public with the family. Some days are just hard. Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.

I can’t help it, so y’all are going to have to forgive me.

Now, enter Down syndrome.

Let me be very clear – my little sweetheart does not act out because she has Ds. She acts out because she is two. And it’s normal. Some days are pretty rough.

Aren’t they for all of us?

But this is the perception that I find myself fighting, which has now intensified my need to keep it all together. I know it’s not really about Down syndrome. I just really want everyone else to believe me.

Church Sunday started off well enough. Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores). Then, it got a little hairy.

We sit in the pew directly in front of our Praise Team. John was playing, so it was just me in the pew with the girls. Ellie was, for once, an angel. But Tessa decided that it was time to be free.

During the sermon, it started with crawling back and forth. I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on. When it is “on”, it vibrates. She loves it. It’s very soothing.

She threw it.

She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.

I about died.

The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them. Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way. Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15) and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.

And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”

Because it’s not about the Down syndrome. It’s just my kid, being naughty, as kids do. I just want people to see that.

In case you wondered, we got the Z Vibe back after church ended. The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to. Thank God for that.

When my youngest was two we were sitting in the pew listening to our beloved pastor drone on and on on a very hot, sticky July Sunday. She wasn’t the only restless one, but she was the only one to do something about it. When Pastor paused to take a breath, she leaped onto the pew and LOUDLY shouted “Amen!” The congregation broke into laughter, and Pastor said, “Well, there’s nothing else to say after Amen”, and left the pulpit. I wanted to have the earth open up and swallow me.

Sharing something that my kids liked. When one of my little ones got tired of all the stickers, mazes, etc. that I brought, I held his/her hand and traced (with my finger) a spiral starting in the center of the little palm, going all the way out to up and down each finger (if time and siblings allowed) and then back into the center. As they got older, occasionally one would return the favor. 🙂 It allowed me to listen (or whisper to another kid if needed) while keeping one busy & quiet. Grandkids like it, too!